bookmark_borderUnjustified and baseless belligerence

I recently saw a social media post that said: 

“I hate when people say autism doesn’t have a look. Cause for many of us, we look autistic… Stop trying to erase visibly autistic people.”

The post listed things such as flapping hands, stomping feet, screaming loudly, and vocal stimming as attributes that make a person allegedly look autistic.

There is a problem with this logic. The things listed in the post, although characteristic of autism, don’t have anything to do with a person’s look. The things listed are behaviors and mannerisms, not attributes of a person’s appearance. 

A person’s look refers to attributes such as hair color, hair length, hair texture, eye color, skin color, height, build, etc. A person’s behaviors and mannerisms, such as flapping hands, stomping feet, screaming loudly, and vocal stimming, are not part of their look, per se. 

So yes, it’s absolutely true that there are behaviors and mannerisms associated with autistic people. Autism, by definition, is a collection of traits, and some of these traits have external manifestations. It’s also true that autistic people vary in their ability and willingness to hide (“mask”) their traits by refraining from the associated behaviors and mannerisms.

But this is an entirely separate thing from a person’s “look.” 

Some people act, and behave, autistically. Some people have behaviors and mannerisms that make them obviously autistic. But that’s not the same thing as looking autistic. Autistic people can have any hair color, hair length, hair texture, eye color, skin color, height, or build. Therefore, contrary to what is claimed in the post, autism does not, in fact, have a look

Honestly, posts like this make me angry and exemplify what is wrong with the online autistic community. This post is problematic not just because it is completely false and based on an incorrect understanding of what words mean, but also because of its belligerence and nastiness.

The person who made this post is literally expressing hate towards people who use the word “look” correctly by claiming, correctly, that autism does not have a look. The person who made this post is accusing others of “trying to erase visibly autistic people,” when all we are doing is using words correctly.

Using words correctly, as opposed to incorrectly, does not constitute erasing anyone’s existence, and it does not make a person deserving of hate. The belligerence and nastiness expressed in this post have no justification, because they are aimed at people who have done nothing wrong whatsoever. 

Posts like this are not harmless, not merely illogical and wrong. They inflict pain on innocent people. Even though this post was not addressed to me specifically, it hurts to be subjected to hate and false accusations merely for using words correctly. It hurts that the autistic community is filled with so much unjustified and baseless belligerence, directed towards people who have done nothing to deserve it.

bookmark_borderA meltdown caused by blogging time being cut short…

Today, I feel horrible. I woke up to find little pieces of paper – the remnants of the envelopes and advertising that had come in the mail – still scattered all over the floor. My throat is horse and my head achy from screaming, again and again, at the top of my lungs. My hand is bloody and swollen from punching the granite kitchen counter. My feet and ankles are sore from stomping again and again on the floor. I am concerned that the foundation of my house might be damaged from all the stomping, and that my hands might become permanently damaged from these repeated injuries, if they are not already. This is a particularly disturbing possibility given that my job centers on picking up, lifting, and handling objects with my hands. I feel guilty and demoralized. I’m angry – angry at others, angry at myself, angry that instances like these keep happening. My body feels heavy and tired. My chest is tight, my arms and legs leaden, my stomach twisted in knots.

Yesterday, I had a meltdown because my blogging time was abruptly cut short.

I was at my parents’ house, and the plan was to watch Survivor, as well as the Bruins game. Survivor was on from 8:00 to 9:30, and the Bruins game started at 7:30. So, in addition to being able to watch a half hour of the game before Survivor, we would also be able to watch the end of the game, because it would almost certainly still be going when Survivor ended. Then, after the game ended, I would go home. My parents and I all agreed to this plan, and I was looking forward to the night of TV watching.

Personally, I never just sit and watch TV. It doesn’t work for me to sit and passively watch without anything to occupy my hands. Plus, I live with a constant backlog of topics that I want to blog about, making it foolish not to take advantage of every potential chunk of blogging time that I get. So whenever I am watching a TV show or sports game, I blog at the same time. Usually, it works well.

The thing about blogging is that it is highly momentum-dependent. It’s not the type of task that you can do a little bit of whenever you have some time. Blogging works much better when you have large, uninterrupted chunks of time, because it is mentally laborious and requires focus and concentration. Usually, once I sit down to work on a blog post, it takes me some time to get momentum going, to get into a state of flow. Once I am into this flow state, I am very productive. The writing flows effortlessly. I can keep writing and writing and not get tired at all. Because I work full time and own a home, I don’t get a lot of opportunities to get into this flow state. And when my momentum is interrupted, it’s difficult to get it back.

Yesterday, when Survivor ended and my dad changed the channel to the game, the third period was just beginning, and the Bruins were losing 3-1. My dad asked me what I wanted to do. I was surprised, because I thought everyone had agreed to the plan of watching the rest of the Bruins game after Survivor. Why would he be asking me what we should do, when the answer to that question had already been decided upon? *

Plus, for the preceding two hours, my blogging hadn’t been going smoothly. I was getting bogged down. What I thought would be a quick, easy blog post turned out to be more complicated and difficult than I had anticipated. But as Survivor was ending, I was finally making great progress. I was finally getting into a flow state, and finally starting to feel good about how the writing was going. My dad’s suggestion to leave came at the worst possible time.

My dad indicated that he was okay with staying for the rest of the game, unless the Panthers scored another goal, making the score even more lopsided. Naturally, about 30 seconds later, the Panthers scored. And so my blogging time was abruptly cut short. The momentum that had just started to get going, came to a screeching halt. **

There was something about having my blogging time cut short, without warning, that made my brain explode. It’s not just the fact that I had to leave at 9:30 as opposed to approximately 10:00. It’s the fact that I was expecting to have until 10:00, only to find out, without advance notice, hat I only had until 9:30. It’s the fact that I was counting on having until 10:00, only to find out at 9:30 that I was expected to leave immediately. I hadn’t gotten my belongings together or put my socks or shoes on, and I had been planning on getting another helping of ice cream and another helping of water. I wasn’t prepared to leave, because that’s not what I was planning on. I thought that I had an additional half hour of time left. It was another instance of the type that I’ve written about before – an instance in which things did not unfold according to the picture I had in my head. ***

And so I exploded.

I simultaneously knew that my anger was irrational, and lacked any ability whatsoever to stop it.

The rational part of my mind was fully aware that it did not make sense to be that angry at something so relatively unimportant. The rational part of my mind was even aware that if I hadn’t gotten so angry, I would have been able to open up my computer upon arriving home, resume working on the blog post, and possibly finish it, all while watching the end of the Bruins game on my own TV. In other words, if I hadn’t gotten so angry, I would have been able to avoid the very outcome (the premature end to my blogging time) that I was so angry about.

But none of this knowledge had any power to make me any less angry. Rage coursed like molten lava through my veins, overtaking my mind and body and soul. The anger was so strong that nothing could stand in its way. It took over my entire consciousness. Logic was feeble and powerless in the face of the overwhelming, uncontrollable fury. Like an erupting volcano, or an exploding bomb, once the anger started, there was no stopping it.

So I was completely consumed by anger, while simultaneously knowing that it was irrational. I feel guilty, because my dad didn’t really do anything wrong. One day my parents will be gone, and I don’t want incidents like this to be the main thing that I remember from my time with them. I feel frustrated and demoralized, because I’ve tried so hard to prevent these types of incidents from happening, yet they still keep happening. I feel conflicted, because I truly believe that autism is a gift and a superpower. I’m proud that I have it, I don’t consider it a disorder, and I don’t wish to be neurotypical. But these beliefs seem to be incompatible with the fact that my autism causes me to feel and behave in ways that I know – at the exact same time that I am feeling in behaving in these ways – are irrational.

I know that my ability, and need, to hyperfocus are part of my autism. I know that it is part of my autism to have problems with transitioning from one activity to another, and with unexpected changes to my plans. It is due to autism that I need such copious amounts of blogging time, due to autism that it causes me such distress to have that time interrupted, and due to autism that once I get into a flow state it is difficult for me to stop.

Perhaps the reason why my anger exploded so severely yesterday is because I initially tried to suppress it. I reluctantly agreed to my dad’s request to leave after the Panthers’ 4th goal, pretending that it was okay with me, even though it wasn’t. I didn’t want to inconvenience him, I didn’t want to be high-maintenance, and I didn’t want to cause a conflict. It wasn’t until I got back to my house and shut the door behind me, that the anger exploded. Perhaps I should accept my needs as an autistic person, even if they seem unreasonable to others, rather than suppressing them. Using willpower and self-discipline, forcing myself to tolerate things that upset me, might work in the short term but are not long-term solutions. Acting as if you do not have the needs that you have, does not cause you to stop having those needs. It causes the needs to go chronically unmet. And that will eventually result in an explosion.

* When my dad and I discussed this today, he explained that for him, it’s not enjoyable to watch a game when his team has no chance of winning. He would rather watch a competitive game between two teams that he doesn’t care about. For me, although I prefer the Bruins to win, the score has no impact on whether or not I want to watch the game. The important part of watching the game, for me, is watching the athletes warm up, make their entrance, go out through the tunnel, etc. and watching the video montages and the interviews before and after the game. All of these things take place regardless of what the score of the game is. And all this is, of course, in addition to the blogging that I was counting on doing while watching the game.

** “Couldn’t you just finish the blog post at home?” you might be thinking. But unfortunately, the mere process of having to pack up my laptop, put my shoes and socks and jacket and hat on, get into the car, get out of the car, check my mail, unlock my door, and unpack my stuff again, is enough to shatter my concentration and ruin my blogging momentum. More often than not, once my momentum is brought to a screeching halt by the process of leaving, it is sufficiently late that it doesn’t make sense to start up again, and so my blogging time for the day is done. And also more often than not, the following morning is filled with various tasks, and then I have to go to work, and then I get home too late to start blogging, so I don’t end up having another opportunity to blog until my next day off.

*** There were also a couple of other things weighing on my mind that may have contributed to why I became so angry. Recently, I made the decision to completely quit socializing (as radical as that may sound) but was second-guessing that decision because I heard about an all-you-can-eat ice cream event that actually sounded like it could be fun to go to with a particular group of friends. Additionally, two people have asked me to do drawings, which is flattering and awesome, but cuts into blogging time, making the blogging time while watching TV even more crucial.

bookmark_borderEmbracing imperfection

As a person on the autism spectrum, I have a tendency to be a perfectionist. I tend to have a picture in my head of how the day is going to go, and tend to become very upset if things do not go according to how I pictured them. I struggle with being flexible, and tend to feel that if things do not go perfectly, then everything is a disaster and the day is ruined.

(Lately I had numerous instances of things getting messed up and not going according to plan, which I wrote about here.)

A couple days ago, however, I had some success with embracing imperfection. 

It was a warm and sunny morning, and I decided to take a walk around the pond near my house. The trees were still blooming with beautiful white and pink flowers. After my camera had inexplicably decided not to work, I had done some troubleshooting, and I thought that I had fixed the problem. So I brought it along to take photos. Imagine my shock and dismay when, again, the shutter button refused to work, in exactly the same way it had earlier! I angrily trudged home and sulked around. But then, a little while later, I decided to return to the pond and take pictures with my phone. 

Although I much prefer to use a “real” camera, it was better than nothing.

I enjoyed being outside in the beautiful weather and looking at the trees, flowers, ducks, geese, and trucks rumbling to and from the construction site at the top of the hill. 

Farther away from my house, there is a park with a World War I memorial, which is decorated with different flowers depending on the season. I knew from seeing the park in passing that there were currently bright yellow daffodils and beautiful tulips planted there, but I hadn’t had time to actually stop and get close-up to take photos. A sufficient amount of time had gone by that I figured the daffodils would be wilted and sad-looking. But after my walk around the pond, I had extra time, so I decided to make the walk to the park anyways. To my surprise, the flowers, even though they weren’t in absolutely pristine condition, still looked beautiful.

And even though I was stuck using my phone as opposed to my “real” camera, I still got some pretty good photos. 

The moral of the story: An imperfect day can still be a good one. “Plan B” is not as good as “Plan A,” but it is better than nothing, and it is certainly better than giving up on the day entirely. 

bookmark_borderA week with too many things going wrong

During the past week or so, too many things have been going wrong. Too many mistakes, fails, mishaps, fiascos. None of the things are particularly serious in themselves, but combined, they feel like an avalanche, a cascade, a tidal wave of badness.

It started with a UPS fiasco. I bought a retired American Girl doll named Caroline from an Amazon seller, but the UPS driver could not find my house. I received an email prompting me to go to the UPS website to either confirm or correct my address, and I confirmed that I had entered my address correctly. The same exact thing, however, happened again the following day. I emailed UPS to give them directions to my house, but the same thing happened yet again! So I called them (something that is very difficult for me due to my shyness). The driver was finally able to find my house, but not until I had already left for work (I work afternoons / evenings). This would be fine, except for the fact that a signature was required for the delivery. So UPS informed me that they were sending my package to a convenience store that doubles as a UPS access point. I figured, therefore, that I would be able pick up my package up the next day before work, but it didn’t actually get to the convenience store until late afternoon. So I had to wait until the day after that. On that day, as I was about to leave for the convenience store, my mom texted, much earlier than I was anticipating, to let me know that she was ready to meet for lunch before work. So I had to wait another day. Finally, I made it to the convenience store and excitedly told the cashier I was there to pick up a UPS package. She asked for my ID, which, to my dismay, I realized I did not have. (I had brought my credit card, debit card, and subway pass, just in case I might need them, but it didn’t occur to me to bring my license.) Because an ID was required to pick up my package, I returned home empty-handed, having made the 40-minute round trip walk for nothing.

(Wow, that paragraph turned out to be really long!)

The fiascos continued from that point, with the following being a few examples:

  • When I went to Starbucks before work, they got my drink wrong, giving me a smaller size than what I had paid for. I brought it back (difficult for me due to my shyness) and they got it wrong again!
  • My neighbor called me, texted me, and then began banging on my door all while I was in the middle of a therapy appointment via zoom. I was having tree work done in my yard, and feared that something seriously bad had happened, such as a tree falling on my neighbor’s house and destroying it. I didn’t know whether to continue with the therapy appointment or to tell my therapist that an emergency was happening and that I had to go. I opted for the first option, but was so distracted that I wasn’t able to absorb anything my therapist was saying. It turned out that my neighbor’s issue was not urgent or time-sensitive at all.
  • I was asked to work an overnight shift, and my parents and I made plans to have dinner at a nearby restaurant before work, something that I really enjoy but don’t often get to do because I usually work at dinnertime. I packed a bag of the things that I would need for work and put it in the trunk of my mom’s car. Before dinner, I worked out on my parents’ exercise bike (which I use sometimes because I don’t own one myself). We got into my dad’s car, drove to the restaurant, and parked outside it. I opened the trunk and was appalled to find no bag inside. Neither my parents nor I put two and two together to realize that because the car that was used to drive from my house to my parents’ house was a different car than the one used to drive from my parents’ house to the restaurant, I would need to move my bag from one trunk to the other. I ended up in tears and feeling so sick that I was unable to eat anything, and my dad ended up having to drive back to the house to get the bag.
  • At work, I was assigned a block of time to collect shopping carts in the parking lot, but I didn’t, because I didn’t know I was supposed to do that during that block of time. (I really enjoy collecting shopping carts too; I just completely forgot that I was supposed to do it.)
  • I decided to walk around the pond near my house and take photos of the pretty trees, because the white and pink flowers were beginning to bloom and looked really beautiful. When I reached the beautiful trees, I took my camera out of my purse, turned it on, composed the shot, and pushed the shutter button. Nothing happened. I pressed the shutter again and again, but no matter how hard I tried, my camera was unable to take photos.
  • An extremely embarrassing incident happened at work, in which I got one customer confused with another and said something to him that made absolutely no sense, because I thought he was the other customer.

None of these things are the end of the world, exactly, but with so many of them happening within a relatively short amount of time, I am stressed, angry with myself, and filled with self-doubt. My life has been filled recently with one setback after another, and I haven’t been able to fully recover from each setback before the next one happens. I keep getting knocked off-balance, and there is no time to re-stabilize before I am knocked off balance again.

Some of these fiascos are just bad luck (e.g. Starbucks, my neighbor, my camera), while others (not bringing my license, failing to ensure that my bag was in the correct trunk, mixing up my work schedule, mixing up two customers) are arguably my fault.

The fact that I am on the autism spectrum relates to this string of fiascos in two ways: first because my brain is more likely to fail at certain types of tasks, and also because I tend to become more upset than the average person when a relatively minor fiasco happens.

I have a very high IQ, and my brain can do many things that the average person’s can’t. But I also have a disability, namely autism. Although I excel at math, reading comprehension, memorizing facts, and understanding complicated logical concepts, I struggle with things that most people consider to be “common sense.” I tend to forget / misplace / lose track of things; I tend to do badly with social interaction, which includes recognizing and remembering people; I tend in general to fail at things that others find simple.

I also tend to become completely unglued when an unexpected problem occurs.

As I exited the convenience store and walked, dazed, through the parking lot, I was overwhelmed with anger and frustration (at myself, not at the cashier, because the ID requirement logically makes sense). I could feel heat rushing through my body. It felt like the world was spinning around me and I was lost at sea without a paddle, buffeted about by the waves. Even though I knew logically that nothing disastrous had happened – there was nothing time-sensitive within the package, and I could go back and pick it up the following day – I was overwhelmed with emotional upset.

Similarly, the moment I discovered that my camera was inexplicably not working, I was filled with rage so strong that I wanted to kick the nearby wooden bench and smash it to pieces. As I repeatedly turned my camera off and back on again, scrolled through all the different menus trying to figure out what had caused the problem, and tried every possible combination of settings, a lump formed in my throat and tears came to my eyes. Despite knowing logically that I could take pictures with my phone instead, I was overwhelmed with emotional upset by the fact that I was expecting my camera to work the way that it usually does, and it didn’t do that.

The reason these types of things are so upsetting to me is because, as an autistic person, I start each day with a picture in my head of what is going to happen. I expect and need things to go according to this picture. When they fail to do so, my brain basically goes crazy.

In that moment outside the convenience store, all I could think about was that I had planned to pick up my package that day. Not the following day.

In that moment at the pond, all I could think about was that I had planned to walk around the pond and take pictures with my camera. Not with my phone.

I could not access logic in those moments, because I was so overwhelmed by the fact that things did not go according to the picture in my head. Knowing intellectually that the problem wasn’t a big deal didn’t make me feel any better. I couldn’t move on to alternative plans, such as picking up my package the next day or taking pictures with my phone, because my brain was stuck on the picture of how the day was supposed to go.

So over the past weeks I’ve been beating myself up, both about this series of fails and about my reaction to them. I know that I tend to lose track of simple things, so I use compensatory strategies such as setting reminders, using calendars and checklists, and double checking to make sure I haven’t forgotten anything. I know that I struggle with facial recognition, so I make a deliberate effort to remember people’s features, hats, and clothing items. I’ve been beating myself up about the fact that despite being aware of my weaknesses and taking measures to compensate for them, I still failed. And I know intellectually that picking up my package the next day and taking pictures with my phone are perfectly good options, so I’ve been beating myself up for emotionally falling to pieces over what are objectively minor setbacks.

I am generally perceived as being relatively “high-functioning” compared to other people on the spectrum, and other people with disabilities. I live by myself, I work full-time, I don’t go to a day program, and I don’t have a legal guardian or conservator. I take pride in these things and, quite frankly, want it to stay this way. It is important to me to live a life in which I move about freely and make my own decisions, as opposed to being supervised at all times and having my schedule and activities organized by someone else. I don’t want to be a burden, or a pain in the butt, to the people around me. I don’t want to be erupting in emotional outbursts, ruining dinner plans, requiring people to rescue me from crises, or disrupting people’s days with my needs. I want to be a competent person, both at my job and at the tasks that need to be done outside of work. I want to be a person who is calm, logical, and put-together. I want to be able to complete my activities of daily living independently. I don’t want to be dependent on others.

Weeks like this make me doubt myself – my own competence, my own capabilities, and my own ability to function in the world. Recently my new statues have arrived, something that I know intellectually is far more important than any of the fiascos that I’ve described. These past weeks should have been filled with joy and excitement, but instead they’ve been filled with emotional turmoil. Hopefully I will have a relatively fiasco-free stretch of days, and what I know intellectually to be true will also feel true emotionally.

bookmark_borderSensory sensitivities aren’t as bad when you don’t have to hide them

Yesterday I was walking to the train station after work, and I was in agony. As an autistic person, I have severe sensory sensitivity to wind. As I speed-walked down the sidewalks and ran across the streets, trying to get to the station as quickly as possible, air blasted brutally and relentlessly in my face, freezing my cheeks and nose and causing excruciating pain throughout my entire body. 

As I waited for the train, exhausted and trying to recover from the assault, I dreaded the walk at the other end of the commute, from the train station near my house, to my house itself. This walk is more than twice as long as the one from work to the station, and there was no reason to believe the wind would be any less vicious. Because I had gotten out of work a few minutes late, there was no way I could catch the bus from the station.

After getting off of the train, I took my time securing my hat on my head, putting on my gloves, and making sure my scarf covered as much of my face and neck as possible. By the time I stepped out into the painful conditions, the crowd of people from the train had dispersed. Because there was no one to feel self-conscious in front of, I muttered under my breath as I walked. I complained, sometimes profanely, about how painful and horrible the wind was, about how wrong it was that work got out late and cause me to miss the bus, about how bizarre it was people could walk around and exist in these conditions as if nothing was wrong, and about why the heck humans hadn’t invented a way of preventing such atrocious weather conditions from occurring. 

A remarkable thing happened as I made my angry way through the streets: the wind wasn’t as bad as I thought it would be.

When the ice-cold blasts of air started to increase in frequency and severity, I turned around and walked backwards. That way, the back of my head sustained the brunt of the assault, as opposed to the bare skin of my face. This slowed down my progress considerably, and I must have looked like a complete lunatic to anyone who happened to be observing from the houses that lined the streets, or the cars that occasionally passed by.

But miraculously, it worked. Freed from the obligation to act in a socially acceptable manner, I was able to take the measures that I needed to take in order to minimize the pain. Wearing the warmest clothing possible, walking as quickly as possible, walking backwards when the direction of the wind demanded it, and expressing my anger and pain, all combined to reduce the amount of suffering that I was subjected to.

My past self, if faced with this same situation, might have forced herself to walk quietly and forward-facing at all times, perhaps even with a smile on her face. And then, upon arriving home, she would probably have commenced screaming, kicking furniture, and throwing things immediately after stepping through the door. But because I gave myself permission to do what my body needed, regardless of how it looked to other people, I was able to survive the journey home with a minimum of suffering. 

In the autistic community, the act of forcing oneself to appear socially acceptable is known as masking. This is something that I’ve done to a very high degree for almost my entire life. When I mask, I force myself to hide my sensory sensitivities and other autistic traits. I pretend that I am okay when I am not, I pretend that I am happy when I am miserable, and I pretend to like things that I don’t. I force myself to behave the way that “normal” people behave, even when it goes against my preferences, needs, and true nature.

I wonder how much of autistic people’s suffering is caused by sensory issues themselves, versus how much of our suffering is caused by depriving ourselves of the things that we need to manage the sensory issues, out of the belief that these things would look “weird.” Is it autism itself that makes life difficult, or is it masking?

To a large degree, I think the answer is the latter. Masking is something that I am trying to do less of. I am no longer willing to deprive myself of the things that I need, and subject myself to needless suffering, for the sake of looking “normal.”

bookmark_borderThe worst sensory experience of my life

On Saturday night, I endured the worst sensory experience of my life.

I was walking to the train station from work, and out of nowhere I was attacked by the worst wind imaginable. Wind so horrendous that I don’t even think the word “wind” is adequate to characterize it. It attacked me with a viciousness and brutality so severe that it felt like sharp claws ripping and tearing at my clothing and skin. It felt like being stabbed by a million icy cold knives, my skin shredded to pieces. I was in such atrocious pain that I was literally screaming in agony while I sprinted down the block to the train station. (There were a few people out and about who almost certainly thought I was insane; I’m lucky that no one called the cops.)

It was torture.

In my opinion, weather is simply not supposed to be the way it was during that torturous walk. Obviously, part of existing on earth is the fact that on different days, you get different types of weather. There are warm days, cold days, sunny days, cloudy days, rainy days, and, yes, windy days. But this was not merely a windy day. This was an abomination. Air is simply not supposed to act like this.

The wind was so bad, in fact, that even inside the train station, even after I had angrily stomped up the stairs to the second level of the station, ice cold wind was still blowing through the train station.

The experience was so horrific that even hours after returning home, I could not recover. No amount of being inside a warm, wind-free house, or drinking hot tea, could help me to feel better. The only thing I wanted was to scream and scream and scream at the top of my lungs, and to smash every building on that evil block into pieces until all of the apartments and all of the storefronts were reduced to a heap of rubble.

The experience itself lasted only a minute or so, because I was only a block away from the train station when I was assaulted by the abominable wind, but I could not get it out of my brain. I re-experienced it again and again while I was lying in bed, trying futilely to fall asleep. The sensation of the wind ripping and tearing at my face and neck, and buffeting and battering my body, is permanently etched into my consciousness.

As an autistic person, sensory sensitivities (finding certain sensory experiences unpleasant, distressing, and even painful, which most people are not bothered by) are a big part of my life.

As you may have guessed, wind is my biggest sensory sensitivity. Noise is one as well, particularly sudden noises that come out of nowhere. Light is another, particularly when it is at the wrong angle, shining directly into my eyes.

Obviously, although most people would likely not enjoy spending time in such strong wind, my autism is why the wind felt so incredibly distressing and painful to me.

I am certain that if other people experienced what I did during that horrible walk, avoiding creating the conditions that cause such strong gusts of wind would be the number one priority of every city and town government, every architectural firm, and every civil engineering department. If other people experienced what I did, they would do whatever it took to prevent such an experience from happening to another person ever again. Even if that meant demolishing buildings and rebuilding them in a different place. Even if it meant razing entire city blocks and entire neighborhoods.

But other people do not experience what I do.

So I’ve been thinking about steps that I could take to decrease the odds of having a repeat of this experience. As I’ve embraced my autistic identity more and more, I’ve been thinking about ways to accommodate my sensory sensitivities, ways to avoid being subjected to the things that cause me discomfort and distress, ways to hopefully allow me to have a better quality of life.

The autistic community is pretty much in agreement that sensory sensitivities do not diminish with repeated exposure. Autistic people can’t “get used to” the things that bother us, or learn to tolerate them over time. If anything, it’s the opposite: the more we are exposed to something that bothers our sensory sensitivities, the more it bothers us.

Wind is a difficult thing to avoid, however.

It is impossible to predict with any degree of certainty whether any particular street or block will be particularly windy at any particular time. Yes, some streets are more predisposed to wind than others, but on the Saturday night from hell, a street that has frequently had terrible wind in the past was fine, while the abomination happened on a street that has never been a problem, wind-wise, before. I could choose a route to the train station that avoids both of these streets, but there’s no guarantee that a different street won’t randomly happen to have terrible wind.

Because wind is just that – random. I’m sure there are scientific laws that explain why some places tend to be more windy than others (I’m not a scientist, so I don’t know the details), but any prediction is inexact and uncertain. I check my weather app each morning, but it is an imprecise guide. There have been days when the app shows a wind warning and/or an icon signifying strong wind, but once outside I don’t find the wind to be particularly bad. Conversely, there have also been days with no wind warning and no icon, on which I nonetheless find the wind to be absolutely awful.

Clothing such as scarves, down parkas, and hats with ear flaps help, but don’t prevent suffering entirely when the wind is really bad. It’s also not really socially acceptable to wear such clothing in spring, and wind can really bother me in that season as well, even though the temperature is not as cold.

I could take Uber or Lyft to and from work to minimize my amount of walking, but that would be much more expensive than the train, and I also enjoy riding the train much more than I enjoy being in a car one-on-one with another person, with whom I feel obligated to make small talk.

I could buy a car (something that I don’t currently own) and drive everywhere that I need to go as opposed to taking public transportation or walking, but that would be quite expensive as well. Plus, there’d still be a chance of getting attacked by a gust of wind in the parking lot.

The only way to avoid wind entirely is to never leave one’s house, and that is neither a practical option nor a desirable one. I wouldn’t be able to work, for starters, at least not at my current job. Plus, I really enjoy running errands such as going to the post office, bank, convenience store, and grocery store. I also enjoy walking around in both natural and urban environments and taking photos of the things that I see. And walking is good exercise, which is valuable as well.

Having said all of that, I am trying to manage risks wisely and minimize exposure to the things that bother my sensory sensitivities when it makes sense to do so.

Yesterday, for example, with Saturday’s abomination still fresh in my mind, I decided to take the bus to the downtown area to buy face cream at the drug store, deposit my paycheck, and get a coffee at Dunkin. Normally I would walk, but as I was about to leave my house, I realized that the bus was due to come soon, and I was able to catch it without waiting a long time. The timing of my errands worked out so that I was able to easily take the bus back home as well. All in all, I was able to complete the tasks I needed to do, walk around the downtown and observe all the goings-on there, and snap a few photos of the bright and snowy day, without being subjected to significant wind.

While wind (like noise or light) is impossible to entirely avoid or accurately predict, I am learning that there are measures that I can take to minimize my exposure. Gradually, I am finding ways to enjoy the activities that are important to me without being subjected to unnecessary distress from my sensory environment.

bookmark_borderMasking is not a privilege

I’ve seen several posts on social media lately claiming that masking is a privilege.

For those who aren’t super familiar with the world of autism, masking is the ability of an autistic person to essentially “pass” as neurotypical – to copy the mannerisms, slang, body language, and communication styles of the people around them in order to fit in and to avoid attracting negative attention.

Masking is something I’ve done for as long as I can remember, way before I began to consider myself an autistic person in my late teens, and way before I received a formal diagnosis at age 26. 

For me, masking is not an ability that I can choose to deploy in certain situations, while refraining from using it in others. This is because, for as long as I can remember, I’ve had something that I refer to as shyness. Shyness, for me, is a disability that makes it impossible for me to be my authentic self when I am around other people. It prevents me from expressing any opinion that the people around me are likely to disagree with, saying anything that the people around me would not expect me to say, or doing anything that the people around me are likely to find weird, strange, or bad in any way. Shyness is not mere social anxiety; it is much more severe and debilitating. I am not merely afraid to do the aforementioned things, or anxious about doing them, or worried about what the consequences would be if I did them. It is literally impossible for me to do them. I physically cannot force myself to, no matter how hard I try, and no matter how strongly I feel that doing the things would logically be the best option in the situation.

What does this have to do with masking? 

Shyness, essentially, is the same thing as masking. Or, to be exact, shyness is what causes / motivates the masking. Shyness is the thing that forces me to mask all the time. Because of my shyness, not only do I have the ability to mask, but I also have the inability to not mask. I cannot turn the masking off, no matter how badly I want to. 

In case you are wondering how a person could come to have shyness, I am not 100% sure, because I have had it for as long as I can remember. But my guess is that it resulted from one or multiple negative social experiences I had at a very young age, perhaps situations in which I received unexpected negative reactions from other people when doing things that I thought were completely innocuous. When one thinks about it this way, it becomes clear that shyness is actually a form of PTSD. Although the negative experiences that caused it were not life-threatening, my nervous system reacted as if they were, and these same emotions are activated each time I am in a social situation. In other words, every social situation that I encounter, triggers the PTSD. Every social situation triggers flashbacks of the traumatizing events that caused the shyness. The flashbacks don’t take the form of visual and auditory hallucinations of the traumatic events, as is commonly associated with PTSD. Instead, they take the form of re-experiencing the emotions from the traumatic events. My nervous system believes that I will die if I do anything that will be perceived as weird, unexpected, or bad in the eyes of the people around me. Therefore, I am unable to do these things, no matter how certain my logical brain is that I will not actually die or, in some cases, that doing the things is actually the best option in the situation.

The shyness has had a profound negative impact on my life. There are numerous jobs that I cannot do because of the interpersonal interaction required. If a restaurant messes up my order, a service provider gives me a surprisingly high bill, or a store overcharges me, I’m not able to say anything. I’m not able to negotiate with merchants or vendors to try to get a lower price. I’m not able to say no to salespeople who try to pressure me into buying things. If I’m having a problem, I’m not able to ask for help. If I don’t understand something, I’m not able to ask questions. If someone asks me to do something I don’t want to do, I’m not able to say that I don’t want to do it, and usually end up having no choice but to do the thing and pretend to be happy while doing so. The medical system is a nightmare, as I’m not able to say no to examinations, tests, and medical procedures that I don’t want. Perhaps most significantly, for my entire life, neither friendships nor social relationships of any kind have ever brought me the slightest amount of enjoyment, pleasure, or happiness. Social activities are, and have always been, an unpleasant chore, a task that needs to be completed before I can have time to do the things that I actually enjoy. Yet whenever someone asks me to do an activity with them, I have to say yes, resulting in my entire schedule being consumed by get-togethers that I do not look forward to and get no enjoyment out of, with no time or energy for the hobbies and interests that make my life worth living.

Many of the autistic content creators on social media who allege that masking is a privilege, also speak about partners, spouses, children, and close friends whose company they enjoy and with whom they feel truly relaxed and safe to unmask. 

Due to my shyness, all of these things are complete non-starters for me. The entire concept of a friend whose company I enjoy is a contradiction in terms. I only feel truly relaxed and able to unmask when I am by myself, or with my statues. (And then I am ridiculed, and called a white supremacist, for my love of statues.) Living with another person, as presumably those with partners, spouses, and/or children do, would be so intolerable to me that I would probably commit suicide if I had to do it for more than a couple of weeks.

Given my experiences with shyness, it is appalling that someone would claim that masking is a privilege. 

Those who claim that masking is a privilege characterize it as a tool, an ability. People who have a tool or ability at their disposal, the logic goes, are privileged compared to those who lack that tool or ability. But for a person with shyness, masking is not something that can be turned on or off, depending on what makes sense in the situation. Masking is not something that can be deployed when necessary or advantageous, and left on the shelf when not needed. Due to my shyness, masking is something that I do all the time. There is no choice. It is automatic. It cannot be turned off.

If anything, it is those without the ability to mask who are privileged. After all, it is such people who are recognized by society as being disabled, and who therefore qualify for the programs, funding, support, and accommodations that people with disabilities are entitled to receive. As a person with shyness, I am not able to act in a way that would reveal my disability. I am not able to tell or show others when I am suffering, when I am having difficulties, or when I am struggling with something. My shyness prevents me from asking for support or accommodations, let alone receiving them. Additionally, if someone is unable to mask, that means that they have no choice but to be their authentic self in every situation. This might be disadvantageous in some contexts, but it also means that if they are accepted by others, they are being accepted as their true self. For me, on the other hand, it is impossible to show my authentic self to others, completely foreclosing any possibility of my true self being accepted.

Whereas some people lack the ability to mask, I lack the ability not to. If I am privileged for having an ability that others do not, then by the same logic, people who are able to take their mask off are privileged compared to me, because they have an ability that I do not. 

In the posts claiming that the manifestation of my PTSD is somehow a privilege, I am implored to put aside my own feelings and thoughts and instead to listen to those who are allegedly less fortunate than myself. But by the same logic, those whose disabilities are more visible than mine, and who therefore do not have shyness, should be implored to put aside their feelings and thoughts in order to listen to mine. What makes people with visible disabilities so inherently superior to me that being a decent person requires me to put aside my own perspective and instead focus on theirs? Why are their perspectives inherently valid, while mine is inherently not? Why are their voices considered worthy of “centering” and “amplifying,” while my voice is considered worthy only of being dismissed? 

Yes, people with more visible disabilities, and more substantial support needs, face challenges that I do not. But as a person with shyness, and a person who has always been held to the same standards as a neurotypical person because I have always been perceived as one, I also face challenges that they do not. I don’t understand why this is considered a controversial concept. 

I have always been opposed to the entire concept of privilege. But when multiple people are claiming that a debilitating form of PTSD is a privilege, it is clear that things have reached new levels of absurdity. The concept of privilege has gone way too far and needs to be challenged and spoken out against. Privilege is a concept whose only purpose is to hurt people, to invalidate their perspectives, and to dismiss their suffering. 

bookmark_borderMy recent experience with autistic burnout

For nearly four years, I’ve been experiencing autistic burnout. I’ve been trying – with some degree of success – to make changes to my life in order to recover from this burnout, but a complete recovery still remains elusive. The burnout has been hitting really hard over the past couple of weeks.

Unlike in previous years, when the statue genocide has made me so disillusioned with the entire society that participating in its traditions has seemed vapid and pointless, there are actually a variety of things that I am excited to do this holiday season.

The problem is that no matter how hard I try, I can’t seem to find the time and energy to do them.

I feel run down and worn out. I keep running into obstacles that, if I were in a better mindset to begin with, I would probably be able to overcome. But when I feel this tired, I lack resilience, and tiny obstacles are enough to completely defeat me. Little glitches, mishaps, and irritations keep happening, my brain keeps exploding, and large amounts of time keep being consumed by recovering from the brain explosion, with no possibility for accomplishing anything productive. And then, the inability to accomplish anything productive makes me frustrated, and my mood turns low and negative, and I start to lose hope that I will ever be able to do the things that I want to do. All of which makes me more susceptible to exploding if another obstacle happens.

To give just a few examples, over the past two weeks, my brain has exploded at:

  • After signing up to have my artwork displayed in a gallery, finding out that I would be required to put price stickers on each piece of artwork (I didn’t have any suitable stickers, so fulfilling this requirement would require me to spend money to purchase stickers)
  • Having to fill out a form on a website, but being unable to click on the “submit” button because it was covered by a banner regarding cookies, and the only way to make the banner go away was to check a box indicating that I agreed to the use of tracking cookies, which I wasn’t willing to do because I don’t believe in tracking cookies
  • Designing photo cards and calendars using a photo website and finding out that the shipping charge was significantly more expensive than I had anticipated
  • My Mom asking me if I was losing my voice, a question that didn’t make sense to me because I had lost my voice for a few days due to a nagging sickness, and at that point my voice was finally starting to come back
  • My Dad asking me if I wanted apple pie when I was in the middle of reading an article
  • My cell phone running out of power and needing to be plugged in for 3 hours before it was able to be used
  • Leaving work at the same time as a couple of co-workers and ending up walking to the train with them and riding the train with them, which deprived me of the alone time that I needed in order to decompress after work

I am not sure what came first, the exhaustion or the parade of frustrating little things. Regardless, I feel trapped in a cycle of being so run down that my brain explodes at the tiniest of things, making me even more run down and even more susceptible to my brain exploding.

Lately, it feels like all of my time and energy are spent merely coping with each day. It feels like I have been surviving, not living.

The Christmas cards, which I ended up ordering despite the unreasonably expensive shipping costs, actually came out really good, and I want to actually mail them.

I’d like to get a Christmas tree and decorate it with the historical figure themed ornaments that I’ve collected over the years.

I of course want to put up Christmas lights near my Stonewall Jackson statue, and possibly on the front of my house as well.

I’ve taken photos of the Christmas decorations near where I work, and the Christmas tree at the pond near my house, and I would also like to take photos of the nativity scene at the church near my house.

I would like to see the Napoleon movie, and possibly bring my mini metal version of Napoleon with me (because clearly, going to the movies with a toy soldier for company is a completely normal thing for a grown adult to do).

I want to do more artwork – there are countless ideas for drawings floating around in my brain that I have yet to put down on paper.

I want, possibly, to start a social media account dedicated to historical figures, where I would re-post / share news about new statues being made, photos from reenactments and celebrations, drawings and paintings and AI art of historical figures, and similar things.

All of these things are important to me.

Perhaps most of all, writing is important to me. I want to do more of it, both on this blog and in the form of a fantasy book series and an autobiography / memoir. What has happened to statues and monuments over the past four years has completely traumatized me and altered my life forever. Writing is the way that I process and respond to it. I am also becoming more aware of how my identity as an autistic person is intertwined with the statues. I want to write more about the statues, about my personal experiences as an autistic person, and about how these things intersect. I feel that I have a unique viewpoint and perspective, and my ideas aren’t like anyone else’s. It might sound arrogant, but I feel that my viewpoint, my perspective, and my ideas deserve to be shared, and no one can do that but me. It would not be an exaggeration to say that the ability to write and to share my ideas is necessary for me to have a life that is worth living. It is incredibly frustrating to keep not having the time and energy to do it.

But as you can see from the fact that this blog post exists, I did succeed in finding some time for writing today. So there is reason for hope.

Perhaps the solution is to schedule time on the calendar for drawing and writing, so that my chunks of free time don’t get eaten up by small tasks such as paying the water bill, sweeping the floor, or doing the laundry. This is something that my therapist suggested, but which I’ve struggled to implement. If I don’t have actually have time for both household tasks and writing, which seems to be the case given that doing the household tasks causes my potential writing time to disappear, then the only logical result of scheduling time for writing will be for the household tasks to go undone. And it is kind of important for me to pay my bills, to wash my clothes, and to keep my house reasonably clean. Scheduling blocks of time for certain activities doesn’t magically create more time; it’s just a form of arranging one’s activities differently. If the underlying problem is that I don’t have enough time for everything, my thinking goes, then rearranging things doesn’t really do anything to solve that problem.

Perhaps the solution is to do little bits of writing and drawing whenever I have spare time, instead of having the mentality that it isn’t worth starting unless I have a large chunk of uninterrupted time in which to work.

Perhaps the solution is to be more disciplined and to do little bits of drawing and writing instead of unproductive activities such as reading articles or scrolling through apps.

Perhaps a solution is a combination of these things.

Regardless, I won’t give up hope. I will keep trying to create a better life for myself, a life in which I actually have the time and energy for the things that are important.

bookmark_borderA**hole of the day: Kevin Farzad

The above post is, seemingly, intended to be funny. However, I don’t find it the least bit funny. I find it offensive and hurtful.

The author of this post, Kevin Farzad, seems to believe that for a person to remain in their hometown and eat at Olive Garden is somehow funny.

He seems to believe that these attributes somehow make a person racist, or at least inclined to make Facebook posts containing links to racist articles. 

He seems to believe that these attributes somehow make a person ridiculous, laughable, a joke.

I don’t get what is funny about any of this.

There is nothing wrong with living in the town that one is from.

There is nothing wrong with thinking that Olive Garden is fancy.

These things do not make a person racist, nor do they have anything to do with a person’s likelihood of posting a link to a racist article. These things are not funny. These things do not make a person ridiculous. These are just normal, and perfectly okay, things that a person might do.

I don’t understand why someone would think that a Facebook friend from high school, who hasn’t left their hometown and who considers Oliver Garden fancy, is funny.

I don’t understand why someone would consider such a person to be ridiculous, to be laughable, to be a joke.

Kevin Farzad is choosing to insult and ridicule people who are doing absolutely nothing wrong but are merely living in a different way than he does.

And I just don’t get what is funny about any of this.

As an autistic person, I live in a town directly bordering the town that I am from. As an autistic person, moving from place to place in service of a series of high-powered jobs that involve slaving for 80 hours a week, is simply not doable for me. As an autistic person, I don’t enjoy constantly going to trendy restaurants and bars. And because I don’t go out to eat very often, I do kind of consider Oliver Garden to be fancy.

As an autistic person whose special interest is history, I don’t support the BLM movement, because this movement advocates for discrimination against, and intentional infliction of harm and pain on, people like me. Some of the articles that I’ve shared on social media, as part of my advocacy for my right to exist, would probably be considered racist by Farzad.

Apparently, to Kevin Farzad, the idea that a person could behave, think, and live differently than he does is laughable.

Ridiculous.

A joke.

Well, I don’t find it funny.

Sorry, Kevin, that I’m autistic and therefore can’t live with roommates and move all over the country and work at a high-powered, 80-hour-a-week job and constantly go to trendy restaurants and bars and be a black supremacist.

Sorry, Kevin, that I am different than you.

Pardon me for being offended that you consider a person like me to be funny, to be laughable, to be ridiculous.

Pardon me for being offended by the implication that because I didn’t move across the country for a fancy job, that because I don’t go to hip new restaurants, I must be racist.

Pardon me for being offended that my existence is being treated as the punchline of a joke.

Sorry to be a stick in the mud, sorry to be a Debbie downer, but I find Kevin Farzad’s post to be stuck-up, mean, judgmental, intolerant, and hurtful.

I don’t get the point of it.

I don’t find it the least bit funny.

bookmark_borderAutism Acceptance Month and Confederate History Month

April is celebrated as both Autism Acceptance Month and Confederate History Month. These things might seem completely unrelated… but for me they are not.

I am on the autism spectrum. I have always experienced the world differently from other people, seen things differently, and thought differently from those around me. Until I was an adult, I never knew that there was a word for the way my mind works. I just thought I was “weird” and “mixed up” and “wrong” for not liking the things other people liked, and for having such difficulty with things like riding a bike, tying my shoes, playing sports, participating in conversations, and making friends, which seemed to come so easily to other people. I didn’t feel that I had much in common with other kids or adults at school, or even my own family members.

I did, however, feel a sense of identity with people from history. My favorite thing to do was to read about them, look at pictures of them, and imagine what their lives were like. I gravitated towards the historical figures who were under-appreciated, misunderstood, and looked down upon, probably because I considered myself to have these characteristics as well. This included historical figures from the Confederacy. Although I am not descended from anyone who fought for the Confederacy, I have always felt a sense of kinship with them because they were underdogs and rebels. They were portrayed in history class as the “bad guys,” but as I read more about them, I realized that they had their own viewpoints, perspectives, and stories, which are too frequently ignored. As someone on the autism spectrum, this was something that I could relate to.

It is difficult to put into words how much happiness historical figures have given me, and how important they are to me. Historical figures made me feel understood, and like I wasn’t alone. Therefore, it is difficult to put into words how heartbreaking and infuriating it has been to witness the horrible things that have happened to Confederate statues over the past few years. These events have made me feel like I am being morally condemned and like I am having my greatest source of joy and meaning taken away from me. As an autistic person who has spent my life trying my best to get through the demands of each day, and to be a good student, a good friend, a good employee, and a good person, I truly don’t believe I deserve this. With so much emphasis being placed on diversity and inclusion, why do I not get to feel accepted or included? Why are people like me no longer represented in art, monuments, memorials, or media? Why does society not acknowledge my perspective, my feelings, my story, or my experiences?

Because of my own personal experiences, both autism and Confederate heritage are integral parts of my identity. Both of these things have helped to shape the person that I am and the perspective through which I see the world, a perspective that deserves to be honored and recognized just as much as anyone else’s. In honor of two important and meaningful parts of my life, I will be celebrating the month of April as both Autism Acceptance Month and Confederate History Month.

Marissa and Stonewall